Administrative Code

"Available Family Income" means the lesser of:
Base income minus the sum of:
$5,500 and
$3,500 times the number of persons in the family, or
One-half of base income

"Base Income" means the income reported for State income tax purposes of all members of the family.

"Core Team" means a team that includes a board certified hematologist as a Hemophilia Service Director, a full-time board certified pediatric hematologist and/or board certified pediatrician (at a Treatment Center that serves children), a nurse coordinator, and a social worker.

"Hemophilia" means a bleeding tendency resulting from a genetically determined deficiency in the blood.

"Hemophilia Treatment Center" means a facility that has met the requirements set forth in Section 146.420 and has been designated as a Hemophilia Treatment Center by the Department.

"Patient" means a person meeting the eligibility requirements for the State Hemophilia Program as defined in Section 146.410.

"Patient Participation Fee" means the amount of expenses for eligible hemophilia services that the patient, or in the case of a minor, the patient's parent or guardian, will be responsible for on an annual basis.
(Source: Added at 29 Ill. Reg. 6967, effective May 1, 2005)

a) An eligible person shall:
1) Be a resident of the State of Illinois; and
2) Not be otherwise eligible for comprehensive benefits under the Public Aid Code [305 ILCS 5] or the Children's Health Insurance Program Act [215 ILCS 106]; and
3) Submit an application form accompanied by a copy of the most recent State Income Tax Return (IL 1040) for the person or, in the case of a minor, for the person's parents or guardian; and
4) Submit the Illinois Hemophilia Program Medical Form signed by the medical director of an approved Hemophilia Treatment Center to document the person has a diagnosis of hemophilia.
b) On an annual basis, the patient shall:
1) Receive a complete comprehensive care evaluation in a Hemophilia Treatment Center, unless otherwise recommended by the center's director.
2) Submit an application form accompanied by a copy of the most recent State Income Tax Return (IL 1040) for the patient or, in the case of a minor, for the patient's parents or guardian.
c) Patient Participation Fee
1) The Patient Participation Fee will be determined annually and is equal to 20 percent of the patient's available family income.
2) In cases where the family has more than one patient participating in the State Hemophilia Program, the Patient Participation Fee will be applied to the family as a unit.
3) The patient or, in the case of a minor, the patient's parent or guardian will be notified in writing of the Patient Participation Fee.
d) Hardship Cases
1) A hardship case refers to a patient who has been determined by the Department to owe a Patient Participation Fee and the patient or, in the case of a minor, the patient's parent or guardian believes the charge will cause financial hardship.
A) The patient or, in the case of a minor, the patient's parent or guardian may request a redetermination of the Patient Participation Fee. The request shall include the following information:
i) Reduction in family income since the previous year;
ii) Accrued medical bills for the entire family;
iii) Other illness in the family;
iv) Increased childcare costs;
v) Extraordinary expenses incurred during the previous year;
vi) Casualty losses experienced during the previous year; and
vii) Resources to which the family has access for medical care, vocational assistance and other supportive services.
B) The patient or, in the case of a minor, the patient's parent or guardian may also submit a written narrative explaining any additional factors supporting the request for a reduction in the Patient Participation Fee.
2) The Department shall review and evaluate each hardship request. Criteria used in the review shall include the number and severity of demands being made on the family's financial resources, the availability of assistance from other sources and the potential stress placed on the family if the Patient Participation Fee is not reduced.
3) The Department will respond in writing with its determination regarding the hardship request. The Department will take one of the following actions:
A) Make no changes in the Patient Participation Fee originally assigned to the patient;
B) Reduce the amount of the Patient Participation Fee; or
C) Remove the Patient Participation Fee.
(Source: Added at 29 Ill. Reg. 6967, effective May 1, 2005)

Each Hemophilia Treatment Center must annually, in a format specified by the Department, attest that the services provided by the center include all of the following:
a) Twenty-four hour attendance by a physician.
b) A Core Team.
c) An Extended Team readily available and accessible for evaluations or referrals.
d) Pediatric hematology services.
e) Dental program.
f) Protocols for the management of complications of inherited bleeding disorders.
g) Comprehensive psychosocial services and counseling.
h) Genetic counseling and testing.
i) Access to laboratory services.
j) A comprehensive home infusion therapy program that provides instruction, ongoing education, monitoring and supervision by medical professionals experienced in the management of hemophilia.
k) Twenty-four hour emergency services with written treatment protocols and a hematologist on-call.
m) Twenty-four hour availability of, or accessibility to, all products for treating hemophilia and related bleeding disorders as recommended by the National Hemophilia Foundation Medical and Scientific Advisory Committee.
n) Active collaboration with local, State and national hemophilia organizations to provide outreach and education.
o) Established linkages with private, public and voluntary service organizations and health care providers to assure a full-range of services to meet clinical and psychosocial needs of the patient and the patient's family.
(Source: Added at 29 Ill. Reg. 6967, effective May 1, 2005)

a) Each Hemophilia Treatment Center shall provide comprehensive care evaluations to patients. The components of the evaluation, specified in subsection (b) of this Section, need not all be performed at the same time or place.
b) A comprehensive care evaluation shall include:
1) Examination by a hematologist;
2) Examination by a physical therapist and/or orthopedic surgeon;
3) Dental examination;
4) Psychosocial assessment by a qualified medical social worker or other qualified person;
5) Appropriate radiographs as deemed necessary and ordered by the center director, the radiologist or orthopedist; and
6) Laboratory studies including inhibitor screen test, liver function tests, hepatitis B antigen and antibody tests, urinalysis and blood count.
c) A summary of the findings of the comprehensive care evaluation and recommendations shall be provided to the patient's primary care physician by the Hemophilia Treatment Center.
d) A review and summary of the findings signed by the center director shall be presented to the patient at the conclusion of the examination.
e) A written statement by the center director indicating that the comprehensive care evaluation has been performed shall be sent to the State Hemophilia Program each year.
(Source: Added at 29 Ill. Reg. 6967, effective May 1, 2005)
HFS 89 ILLINOIS ADMINISTRATIVE CODE Chapter 1, Section 146.440 Subchapter d Section 146.440 Home Transfusion Arrangements

a) The State Hemophilia Program shall assist patients for whom the Hemophilia Treatment Center hematologists request assistance in securing and funding home transfusion materials, including the necessary anti-hemophilia factors. The obligation for training and supervision of patients shall remain with the center directors.
b) The Hemophilia Treatment Center hematologists shall provide to the selected manufacturer's representative or other recognized provider a prescription for the required amount, type, and assay of the specific factor.
(Source: Added at 29 Ill. Reg. 6967, effective May 1, 2005)